I have Acromegaly. Dec 09, I had surgery to remove a pituatary adenoma and surgeons found it was adherrant and hard and like throwing cement on a wall, so they did not get it all out. My IGF1 was about 363 going into surgery and now is 235. I am considered a borderline case, but I dont feel like one. Six months after the surgery, I developed intolerable headaches, which are still with me, May 10 - current.. My endocrinologist will not put me on any acromegaly drugs until my number goes to 100 points above normal.
My forehead is growing again, along with my hands and feet.. my pain is intolerable and the surgeon will not operate again, one more, until my numbers spike.
I wonder if there is anyone out there who could help me, because my IGF1 numbers are high, but not off the charts, I feel I am not getting the attention I need.
Has anyone out there ever been through something like this, because I do not know where else to turn to.. I figure maybe if someone with Acromegaly can share some stuff with me, it may help me to a livable life...
Thank You